posted
So I just looked at my labs. My Vitamin D is 8. It is like ultra low as anything under 50 is deficient and under 30 is severely deficient. Kinda starting to doubt if oral supp will cut it
I read there are IM forms available and maybe even some long acting ones. Anyone know
Posts: 856 | From MA | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hang in there Coltman. You are right supplimenting
can make it worse. But slow and low will not hurt
as long as you are on treatment. It is clear
something in Bb uses up our D. I think they feed on
it. As when I replaced I went super neuro and
almost in a wheel chair. So use caution. It does get better with treatment.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
You should be doing this under the guidance of your doctor. Orals do work but pills are the least absorable. This is a good product and the
most absorable. It comes in 2,000 IU's and 4,000 IU's. You put the drops in water and drink it after you have eater something that contains fat.
Not recommending this site, just using it as an example to show you the product.
As to how much to take your doctor should be advising you about that. Some doctors are using
50,000 IU's a day to get up low levels. Retesting after two months is important to know if the dose should be corrected.
I believe shots work more quickly, but as Pine mentioned some people with lyme have issues with taking vitamin D but it's not good to be deficit in this vitamin.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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quote: My first test showed a level of 42, now I am over 50 and that's just since March. I do supplement, 4K per day.
Umm with that pace it will take me what ,3 years to get to 50? And I cant really go to sun because my eyes start hurting .
quote: My husband's level was 25 and he now has osteopenia. He is taking 10K units per day.
Did your doctor suggest a bone density test?
No she didnt. Kinda baffles me now . I am kinda getting scared now .
quote: I believe shots work more quickly, but as Pine mentioned some people with lyme have issues with taking vitamin D but it's not good to be deficit in this vitamin.
Well I am kinda thinking that I might have absorption problem since its that low .I was taking supplements most of the time and apparently they had no effect
quote: You should be doing this under the guidance of your doctor
... Please dont mention them lol. gets me upset. I mean I have to rely on them for bloodwork but they really really suck. You wait for appointment for months and then they spend 20 minutes with you (which is barely enough to describe the symptoms) and at best you get some lab tests done, at worst they just try to get rid of you.
I have relatively good PCP now , yet she is very unresponsive except in personal appointments(which are very short) which I will try to use to get my labs done . But I have to wait months between appointments and even much longer to get my labs results (took me 6 weeks to get my Western Blot copy -because her own frigging office couldn't get them from her for that long)
I am not wasting any more times on them, - I am convinced now that modern US medicine if completely fubar for anything but emergency and ICU cases. Unless I guess you are rich and can afford private doctor (like literally your own one)
Posts: 856 | From MA | Registered: Jul 2009
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posted
You need to be very careful here. Low vitamin D is not the cause of lyme, but rather a symptom of it. You won't get well by treating symptoms, and in the case of vitamin D you may be making things worse. Some research indicates lyme exploits our vitamin D metabolism in order to evade our immune system. As an analogy, gasoline does not cause a fire, but a low gasoline supply may be a symptom of a fire. Adding more gasoline to that fire won't put out the flames, but rather may make them worse.
Posts: 727 | From USA | Registered: Mar 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I'm not telling you to take Vitamin D, but I can tell you that once I got rid of lyme and company and an endocrinologist discovered my Vit D was low, he gave me a prescription for 50,000 IUs to be taken once per week or once every 2 weeks.
I took it in addition to my daily non-prescription dose of Vit D.
And, I had my bone density test and, sure enough, I have osteopenia. It takes calcium, vitamin D, and magnesium together to keep bones healthy and solid. With a low vitamin D, the bones will suffer.
Just wanted to let you know that higher oral doses exist for the vitamin. But, if you take the prescription dose, you do have to go for blood tests periodically. In other words, you will be under a physician's care for the treatment.
Endo told me that it is not uncommon to have a Vit. D problem as we age since our bodies get less and less efficient at creating this vitamin from the sun.
Regarding frustration with doctors, the insurance companies are what is behind the very short amount of time doctors now spend with patients. I have found that going to doctors who do not take insurance gets me the kind of care I want. You get as much time as you need with the doc. And, the docs who don't take insurance are top notch.
I know it costs money to do this, but this is how you can still get around this problem in today's health care system.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Oral supplementation has helped me. I originally tested at 12 many months ago. My Physician started me on 50,000 iu 1x a week and 1,000iu each day. Recently tested at 59.1.
I would like to be up just a little higher. I know there is controversy about taking Vit D because it feeds Lyme. But my personal decision and my LLMDs to take it because it helps regulate heart beat, builds immune system, and they are stating now can help protect against the swine flu.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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quote:Originally posted by MorningSong: Oral supplementation has helped me. I originally tested at 12 many months ago. My Physician started me on 50,000 iu 1x a week and 1,000iu each day. Recently tested at 59.1.
How long ago that was ? - trying to estimate how long it will take to get back.
I gonna try 50k IU. Weighting my options - I cant wait for lyme to be gone, by that time I can have sever bone density problems (and that is at 29!) . I ll try get my blood test done every month
posted
Originally tested low at 12 on March 12, 2009. Was then started on 50,000 iu 1x a week by family physician.
Started seeing an LLMD in May 2009 who recommended 50,000 iu 2x a week on different days. Did this for only a couple weeks.
Now back to 50,000 iu 1x a week, 5000 iu the other 6 days. Was tested 2 weeks ago at 59.1.
During this time I was always under the care of a physician and had periodic tests done. Please consult your doctor before and during this process as you want to have safe levels. This is just what my doctors did for me.
I hope to be tested again in another month because I dont want to go much higher -- maybe 70s.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I do wish if you replace post progress.
I need the D, but terrified by what happened last
time at 50thou.IU for 4 weeks. It may have been a
coincidence and I was going severe all along. So
please let us know what you do and how you do it.
It will help many many more who may need this
info later. Thanks So Much.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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biotics d mulsion does work- and i like premier research has a new vitamin d i tolerate very well along with coral calciums
must have something to do with the sickness cause i dont know what i did to make it drop that low i try to get sun when its not too hot but right now cant handle the heat
Posts: 187 | From FL | Registered: Nov 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Biotics d-mulsion was the most useless supplement I ever took. Moved to Vitacost 4,000 mg gel capsules and had great results.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by TF: I'm not telling you to take Vitamin D, but I can tell you that once I got rid of lyme and company and an endocrinologist discovered my Vit D was low, he gave me a prescription for 50,000 IUs to be taken once per week or once every 2 weeks.
I took it in addition to my daily non-prescription dose of Vit D.
And, I had my bone density test and, sure enough, I have osteopenia. It takes calcium, vitamin D, and magnesium together to keep bones healthy and solid. With a low vitamin D, the bones will suffer.
Just wanted to let you know that higher oral doses exist for the vitamin. But, if you take the prescription dose, you do have to go for blood tests periodically. In other words, you will be under a physician's care for the treatment.
Endo told me that it is not uncommon to have a Vit. D problem as we age since our bodies get less and less efficient at creating this vitamin from the sun.
Regarding frustration with doctors, the insurance companies are what is behind the very short amount of time doctors now spend with patients. I have found that going to doctors who do not take insurance gets me the kind of care I want. You get as much time as you need with the doc. And, the docs who don't take insurance are top notch.
I know it costs money to do this, but this is how you can still get around this problem in today's health care system.
My endo followed the same treatment course as TF mentioned. She went on to attribute it to a malabsorption syndrome but would not specifically link it to Lyme Disease. My levels came back up to normal after script, but then I was not diligent about continuing with regular OTC supplementation and it tanked again- so now I know to keep up the regemin.
Posts: 365 | From Sylvania | Registered: Aug 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Coltman--
Are you able to sit in the sun...at least 15 minutes without sunscreen on your arms and legs? That's one of the best ways to increase your D levels...I've posted a lot about vitamin D in the past....
Just fyi, you may experience a little additional aching as you try to raise your vitamin D levels...remember, vitamin D is an immune system modulator....I highly recommend getting your D levels in the normal range...
Good luck....
Posts: 1155 | From Southeast | Registered: Oct 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From WebMD:
"Vitamin D is not abundant in our usual food choices, so we get most of the vitamin from sun exposure and multivitamins. The problem is that the sun is not a reliable source for everyone.
The season, time of day, geography, latitude, level of air pollution, color of your skin, and your age all affect your skin's ability to produce vitamin D."
This is what my endo was talking about. In the southern states, sun exposure can provide enough Vitamin D all year long. That is definitely not the case in Massachusettes, however. Also, dark-skinned people are going to need a lot more than 15 minutes exposure. And, older people may not be able to make enough D regardless of sun exposure.
It's not as simple as sitting out in the sun.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hey guys I decided to get my 1-25 levels and bone density tested first, before deciding to go Marshall Protocol or go 50k IU . Marshall protocol does make sense if what they preach is true (e.g. Vit D accts as immune suppressor).
I did work my daily does to 10k for a week or so but didn't notice any changes frankly
I could stay in the sun before for long time (in fact I never ever used sunscreen). I tan extremely well and used to spend a lot of time under the sun.
My eye photo sensitivity makes it hard lately, albeit I did not get sunburns from 20-40 minutes exposures so far (and I am on 400 mg doxy+ 300 mg GSE atm)
And I would say it frustrates me that this VitD issue is so muddy. I read extensively about it and the pro vit studies do not look convincing -as there are many flaws in them ,which ultimately do not support their conclusions. On the other hand there are no studies clearly supporting Marshall theory either.
Posts: 856 | From MA | Registered: Jul 2009
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posted
My vitamin d was severely deficient, too. I started supplementing 5,000 ius daily. It moved a little bit but not high enough.
Then I was given 50,000 oral once a week and 5,000 each of the rest of the days.
My recent labs show my vitamin d not only went up, but is slightly higher than normal.
My LLMD called me yesterday to eliminate all vitamin d supps this week and next week do 5,000 twice a week.
I have also increased my sun exposure. I think that played a big role in my increasing levels.
This whole vitamin d "recovery" took place from May through August. I guess I should also add that I have completely turned a corner in the battle with LD and have been symptom free for two months. So, maybe that has helped, too.
Posts: 103 | From Northern VA | Registered: Apr 2009
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